Dear Lily

Dear Lily,
You've been so lovely to be around lately- just a joy. I wanted to write to you to tell you how much I love you.

We've been professing our love to each other quite a bit lately, actually, and those usually involve food; i.e. 'I love you more than chocolate cake.' and 'I love you more than the ice-cream with sprinkles!' You've also taken to randomly saying, 'I love you, Mommy' and it melts my heart. I think it's so important to let others know they're loved-and I sure hope you feel loved every single moment of every single day.

You've got such a funny sense of humor, too. Lately poop and pee jokes are a hot subject in the house.

I also adore that you're a homebody like I am. Our favorite thing to do on weekends is to stay in our pajamas, make sweets and to 'do whatever we want'. Daddy and Rowan need to get out of the house, but not us!

School is going well for you- your best friend is Violet and she's a ball full of energy. When we pick you up from school you and Violet hug each other and then all of the other kids want hugs. Pretty cool.

You have a sweet little singing voice- You're trying to master vibrato. Haven't quite polished it yet, but you get the drift.  Your tone is great, though, and I love hearing you sing.

Anyway, I just wanted to say hello and to remind you how wonderful you are.

Love, Mommy

The reality vacation

It's really been a long time since I posted anything- Seems like time just keeps flying by.

It's early December already, and the holidays are upon us. This is always such an overwhelming time for me because I'm not historically a great traveler. I get anxious.

We recently took a trip to Buffalo Gap to Holly and Jeff's ranch for Thanksgiving. It was Grandma and Grandpa Mayer's 67th anniversary, Grandpa Howard's 90th birthday and was such a great reason for us all to get together.
I didn't get a ton of pictures, but we sure did have a great time.

Rowan was really out of sorts this particular weekend and it took a toll on both Steve and me. I'm sure it got old for the family, too- I felt like I didn't get to spend as much time having converstations with people as I'd have liked. And I know Steve was feeling similarly.

We are quickly coming to the realization of the overwhelming nature of special needs. We get a ton of help, that is for sure. But as the months go by and as Rowan gets bigger it is harder and harder to comfort him when he is upset. We also so rarely know what is even bothering him- and he seems to get the most upset on weekends, which gets difficult. 

He likes his routine and doesn't enjoy being cooped up in the house. We're learning that about him. He's starting to express himself; likes and dislikes, which is wonderful. 

I guess what I'm trying to say is that when we are home and in our own little world- the world seems a bit easier... when we travel and are out of our comfort zones, without certain resources, and are overtired- things are exponentially difficult.

Sometimes vacations do not feel vacation'y.

All in all, though, life is good- Lily is a genius... exhibit A:

And the ride home with Grandma Gretchen and Grandpa Doug was pretty pleasant:)

No news is good news.

I haven't written in such a long time! Grandma Carole must be getting antsy:)

Our family is really doing well lately- we've been busy this summer trying to get as much outdoor time in as possible.  Here's an update on everyone:

Rowan has been really, really vocal- see his video! He went to the Children's Hospital again this past week and had his VNS turned up two times. Now every five minutes he sounds like a little robot.
I'm not sure if it is helping or not. We've seen much more seizure activity lately, so we will just keep an eye on him.

Lily has been great, too- she is feisty and bossy while being completely lovable and sweet. She keeps us guessing.

Last night she was sleeping in my bed and woke up at 4AM demanding a shower complaining that naps were 'stupid'. Lily 1 Erin 0.

Here she is making a box for Steve on Father's Day.

Steve is in Madrid right now. He flew all night last night and landed safe and sound. He is there for research and to present at a conference and will be gone for 19 days. He was recently awarded a fellowship at NDSU, which is a huge accomplishment.

And this is what I've been up to.

Lily rocks out

Lily had her End of Year program at school last week and I recorded this awesome video for you all to watch! She's a rocker:)

Boys

Just thought this was cute- both passed out. Rowan with a bottle tucked in has arm.

Steve and Rowan will run the Fargo Half Marathon tomorrow... here's hoping for great weather and a good race for them both!

Latest trip to Gillette Children's

I haven't really updated this properly since Rowan's last visit to Gillette Children's Hospital in St. Paul.

Here's where we're at with things:

1. They conducted an EEG that lasted around two and a half hours to get a baseline... They wanted to see where Row is at currently with seizures. Results showed a definite decrease in amps overall from where he previously was (700) down to 200. So that is good. He's having spikes, which show his brain wants to seizure, but they didn't record any active seizure activity. He showed definite loss in brain activity from his Infantile Spasms, and brain activity is assuredly not normal, but all in all, good results.
   
   
   
   
   
2. We are lowering his phenobarbital slowly. Dr. isn't certain it was ever really doing anything, so we're beginning the wean on his morning doses.
3. Rowan is actively being cared for by their Keto team and is now eating about 4 meals per day, including Greek yogurt meals, cheesecake, more avocado, peanut butter, and bratwursts. I'm happy he gets to experience new and exciting meals.  We've also adjusted his KetoCal mixes down from 67 grams per day to 41 with no added Carbs. Not adding carbs into his formula enables us to add more into his meals.
4. VNS is still not turned on. 
5. It appears we will transfer his care to Gillette until Fargo gets a new neuro in July... 

 On another note, and not sure if you've heard, but Lily is growing up.  She tells us this often and stretches her body 'taller' while she lets us know she's a big girl.

Because of her new status, she's gotten a big girl bicycle!  Here she is, but I'll post video soon. She's getting the hang quite nicely!

Turns out going green is difficult.

The past couple of weeks have proven challenging to my Green mission. I can now see that these lifestyle changes will take much time to adapt to and that we'll all have to create new habits.

1. I failed miserably at traveling in any green way at all. I didn't plan well and we ended up buying lots of items at gas stations. My car looked like a garbage pit; plastic bottles, wrappers, etc. I was disappointed about that.
2. I did average last week during a 'test' shopping trip where I took some linen bags along with my Envirosax to use for produce. I did not have any jars with for deli meats and cheeses- but I did ask the worker to place two different kinds of meats in the same bag. The request did not go over well. I eventually convinced  her, but she quit making eye-contact after that, so I suspect she was irritated.  I stuck to the outer areas of the store and also picked up some bulk spices, oatmeal, and trail mix. All in bags, so I need to do better. 
3. I am packing actual silverware and cloth napkins for myself and Lily- She likes having her 'mat' for lunches at school.
4. I've done pretty darned good job at using up left-over foods and foods that will go to waste. I roasted some tomatoes in the oven with some olive oil and sea salt, and they were delicious! I put them in a salad and ate them strait from a bowl.
5. I'm doing well at refusing items we don't need in the house but need to be better at ridding the house of things we do not use or need. Our local thrift stores have gotten quite a bit, but will surely get more!
   
    I decided to do worm composting rather than purchasing the unit I really wanted. After researching, it seems like a better plan for our house. And Steve is working up this whole Aeroponic growing system, so perhaps some of my compost can be used in the plants we grow with soil in the tent.

Oh! I did end up making some body butter I am really excited about- I used this recipe. I added in some Eucalyptus to the mix at the very end and it's really a lovely smell. I use it on the kids and Steve and I love it. It's super great for Rowan, too, because we have to watch that he doesn't get any carbohydrates through shampoos and lotions.

 This recipe made one large LeParfait container and one small one, (the one pictured) which I've brought to work.


It is thick and creamy and is just wonderful. I would be surprised if I ever bought lotion again!

Erin Goes Green

Alright- New obsession.

And if it's my new obsession, it's about to get real for the Hammer Mayer clan.  Zero Waste Home is where this all began, and I'll keep you updated on our progress!

 THIS. This is going to be in our house soon. I've been given the ok to order it (after much discussion, several promises, and a tad bit of begging I'm not even remotely embarrassed about) from my partner.  Here's the deal, folks. I have always, and I mean always wanted to compost. I have no idea why- but I'm so stinkin' excited about trying it.
(please don't be like the juicer, please don't be like the juicer...)

These awesome jars came in the mail yesterday. Huge box and lots of packaging, but I have plans for that- Lily and I are going to build something with the box and use it for art projects.

I went shopping today with one jar and took a look around the store from a different perspective. I was checking out the bulk foods section, the bulk seasonings section, the produce, organic, olive bar and salad bar primarily.  I wanted to get a feel for the types of foods available so I can plan some meals.
I also wanted to gauge how many jars and bags I'll need to bring home different items.

Since I'm also on a mission to rid our house of BPA plastics and chemicals, I have been paying much more attention to packaging, as well.

I'm at the very beginning of this journey- but have made one switch in Lily's breakfasts I'm pretty proud of; She loves pre-packaged oatmeal- and I haven't minded giving it to her much because I think it helps keep her regular and because we've had some issues with number 2's over the past year.

Instead of her pre-packaged sweetness, I've been making her:

• Raw Oats
• Sugar in the Raw
• Cinnamon
• Hemp Seed
• A few chocolate chips (to keep her interested)
• Almond Milk

She's happy and I'm happy. I'm sure I'll find ways to make these little recipes even healthier, but for a beginner, I'm  not disappointed.

Ok- that's it for now.
Tonight I'm going to make some whipped body lotion.
Pretty excited.

Zero.

Pretty sure I bought this ebook: 

 

And now I want this: 

Composter from Envirogadget.com

Things are changing in the Mayer Hammer household... Resistance is futile!

(update)

I just ordered these:

 

 and got some mustard seeds- I don't even like mustard, but Steve does. I'm going to make him a delicious gourmet blend.

VNS and Rainy Days

I took Rowan to the Gillette Children's hospital last week so he could have his Vagal Nerve Stimulator implanted.
I was super hesitant about it- and honestly still am. I don't believe he needed it this soon, but it's done now. The whole thing just reminds me that I'm his advocate, and that I need to make sure I'm 100% comfortable with his care and the decisions that go along with it.
Everything has gone really well so far, though, and he is healing well and chattering all day and night.

Rowan and I drove up last Tuesday afternoon and stayed with Aunties Tessa and Ashleigh. That was fun for both of us. We got to hang out and eat tacos and have some ice cream

Tessa and I left early the next morning for the hospital. I got to go in with Rowan while they were prepping him for surgery and got to be with him when they put him under.

Here he is just out of surgery and in post-op.


And here's Row on some morphine:

While at the hospital, I got to meet with their Keto team. I'm so so excited to get back on track with his diet and the monitoring of that aspect of his care. It hasn't been well managed and I plan to make sure we don't slip through the cracks again.
I think some changes are in order regarding his care- but I'll need to be a tad patient and pragmatic. The right answers will come.


Rowan didn't like all of the wires and monitors and the laying around, but he did like his new weapon:)






Now for Lily:
We've spent some great days together lately. Girls' days!
Girls rule and boys drool; that's our motto...

We love to bake, we build habitats, she does science experiments, and she wrote a book at school.


On Saturday we had a special girls' day together. We decided to go outside in the morning to splash in puddles since it was raining.

 

Turns out it was freezing cold- so we went inside and had some cocoa:)

Steve and Erin get married

I suppose I should post a few pictures of our March 15th ceremony in New Orleans?

Don't be disappointed, but I have very few pictures of the whole week- and apparently even less of attendees!

 For some reason my photos aren't sending from my phone, so here's what you get!! Reverend Jerry Schwem kindly performed our ceremony and was a delight.

I'll post again soon.

Erin

surgery and fears

Rowan has surgery on April 3rd for a Vagal Nerve Stimulator implant. We'll travel to Gillette Children's and he'll stay for four days. Not totally sure how I feel about it...

It's an interesting thing to have to make decisions for a child who cannot make them for himself- or give you an indication of whether it's the right thing; whether it will help. We have to depend upon the direction of his Neurologist and the feedback from other parents of children with Lissencephaly.

Right now Rowan seems to be regressing. He isn't as strong or as verbal as he normally is. This has been going on the past few months. We all suspect it's due to his growth which, of course, affects the success of his medications.  This is no big deal, really, but it reminds me that we're dealing with a brain condition for which there really isn't much help. Sometimes when he's doing so well, it's easy to live in the bubble of growth and change and progress. I find myself thinking he'll shock all of the scientists and researchers with his strength and abilities... then the regression and I'm taken back to what really is.

If I were honest, I'd say that I wonder sometimes if all of the therapies work. I know they work for a while, but does he benefit from them? Does he enjoy them? And then I wonder if some of the therapists are really there to help, or are they just looking for billable hours? You may think this is harsh, but when you're the mother of a child with severe disabilities, you think these things. Sometimes it seems he's overwhelmed with therapies. He gets tired, and when he's so focused on the physical, we lose his verbal skills. He seems quieter and more introverted the weeks he has three or more therapies.

Don't think that I would ever deny him anything helpful- in fact, there isn't much I wouldn't give this kid.... But there has to be a balance. I want give him the things he enjoys- the things that will make him feel better, happier, more comfortable. Fact is, he will not walk. I question whether he will even sit. That said, I do want him to be happy and to enjoy stretching and those things that will help his body to feel better. I'm sure I'm making no sense, but it's helped me to write down.  I don't want to push him for my benefit. I always want to do what is best for him.


Row is getting big. He wants to be held like a baby, and I love doing that for him- my back and neck are paying the price. I wonder how much longer I can hold him in ways that comfort him. I am sure we'll all adapt to his growth, him included.

It may seem like I'm down- and I think I am. I'm worried about him, about the upcoming surgery, about the unknown. I understand how to navigate what we've been through, but have no idea what will happen in the next year.

I belong to a Lissencephaly group, and I see parents lose their kids after desperate battles... unexpected ones. I'm scared for that. I wonder when the day will come we'll have to fight that battle...

So- yeah. I'm sorry if you were expecting a more positive post. I've just been scared lately.

equals

I was watching Steve wrestle with the kids the other night- a pretty regular occurrence in our house- and, through the giggles and squeals I thought, 'what a wonderful thing it is for our children to have a daddy that gets physical with them'.  It's as if they need it. They both love to be tossed around and to be roughed up. And it's good for Steve, too.
I was watching the kids lying on the floor next to each other while Steve tickled them- they were giggling and were brother and sister. Equals in the fun. Equals in the enjoyment of their daddy.